Just When You think You are A Together Adult

Serious warning the following is humourless and true. Read it if you want to know more about Autism in Adults. Otherwise skip it. Believe me.

I am physically sore and emotionally spent. It has been almost 6 hours but my eyes sting and feel dried out & sticky, my cheeks are still swollen and hot. My mouth, my tongue & my jaw ache. My hands sting where they’ve been bitten, the ache where I’ve punched things. I feel bruised, my arms, my legs& the sides of my head. The back of my head stings. I have a throbbing head. My throat is tight, so does my chest. My stomach hurts and I am so tired.

I went to Centrelink today, Australian Social services. After a 3 hour phone call that never got through, a 2 hour phone call that did, I still received a letter of non compliance. The lady on the phone said I definitely complied, she even gave me a receipt number so I was pretty confident. So I lined up and stated my case and was sat down to wait. 1 hour and a bit later I realised that I needed to leave reasonably soon to make the school appointment I have been waiting for months for. I was told if I left I would have to return the next day and there was only one person in front of me. I had been in line about 15 minutes when I went back towards my seat Mum said she was taking Alex for lunch. I didn’t sit.

40 minutes and 4 people later it was my turn. The telephone operator had been wrong we were non compliant, we have a few days grace to get in all the paperwork, doctor’s reports etc.

Doesn’t sound too bad does it. I mean I admit it, it was not to long a wait, we are dependent on the state. It may have been a random check but they are entitled. I do actually believe that.

Unfortunately the letter sent Cat into a tailspin. All of the papers requested had been handed in during the time they were requested by pure coincidence for another bigger thing. That’s why I asked the question do I have to bring in the next set. But the woman said she checked the files and we were compliant. It had taken 4 months to collect the data the first time. Coordinating support workers and doctor’s appointments.

The above wasn’t the problem. The Centrelink building is bright open and filled with people. Food & drink are prohibited. There is no indication of how long the wait might be. There is no music to cover the murmurs of angry people. Movement, strangers, uncertainty when you add a time limit and a threat like no money. Even I never imagined how fast I’d fall. I was thumping my leg & tapping my fingers before I even got to the front of the first queue. I couldn’t sit with Alex and Mum because it was too hot to keep Alex in the car and we trigger each other.

By the time I was seated I had to put my fingers in my mouth to stop from screaming. I then bit those fingers but it stopped the screaming. I could no longer speak. When babies cried or anyone yelled, I had to moan in the same cadence. A couple sat next to me, in between complaints it was clear she was concerned I was on drugs. I didn’t want to frighten anybody. I wrote “Autistic, Anxious, Sorry” on my arm. This act took me 20 minutes and considerable pain. 20 minutes later I caught the guy’s eye and tried to show him. She said “ignore it” then glanced and said “okay, fine”. I had clearly offended her but what the hell am I supposed to do, they sat next to me. My mind was entirely clear but my body was uncontrollable.

In the queue I thought I was a little better but I was still self harming; twisting, biting, scratching and hitting. I tried to speak but my mouth wouldn’t move properly. With all my concentration and a lot of pain I forced words out but I was slurring my words, I didn’t have the full range of sounds. Every word was exhausting and painful. I managed something approximating “poit met door’s schoo leave” (appointment at my daughter’s school, I have to leave) I was asked where my carer was and I had to make her understand I was the carer, the subject couldn’t come. The final part of the wait I punched a pillar & used it to hit my head against. I got some looks, disapproval at this show to prove my insanity. Joke’s on them; officially I’m a carer I don’t benefit one cent from having a disability.

The man who eventually saw me tried being supportive (the staff were nice) but his supervisor was strict. I knew I’d never make it back but he doubled checked I knew what was happening. By that time I was crying. By the time I left the building I was sobbing and hyperventilating, through the fingers. I hopped in the car; despite Mum’s best efforts Alex was also non lingual. They tried to make me drink but my throat was too tight. Mum told me she’d called to get my husband to cancel the appointment. I shrieked in despair, I had 40 minutes I could make it, but I couldn’t tell her. She said I was in no condition for the meeting. When we got home they tried to pull me out of the car I started to scream I couldn’t stop. I screamed for a while then was pulled out of the car. I was led inside because I couldn’t open my eyes.

They tried to make me sleep, I needed to drink, I needed to talk. It took 20 minutes before my husband could understand me, it took hours for me to speak normally. It’s been 7 hours now and I’m still crying.

And guess what, I got a message from the principal upset that I had not turned up, I’m now out of the loop.

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18 thoughts on “Just When You think You are A Together Adult”

The conditions you had to endure sound really bad, and all the paper-work, the checks that they have to make. Understandable, but still…
A bit concerned that you had to write that on your arm. In the UK we can get things like this:

That is such fantastic information. I’ll check if they have something here if not the site looked great. I am fine, I know by now it’s a temporary glitch but I want the information out there. For people to know that a responsible, intelligent & erudite mother can fall apart so thoroughly for little (apparent) reason. My anonymity is gone in a way. I almost wish there had been a video. Neurotypical people know more about autism. I can speak for myself so when I crash I kind of show the two sides. I’m not explaining it properly but better info about people like me that kids, hey? Thanks for the support.

Glad to be of some help 🙂
If you do get some of those cards from the NAS website then get the blue one as well. It’s a plastic credit card size wallet with two pockets to put the cards in. I’ve had mine five years now so it’s getting a little worn. Going to have to get a new one soon.

Wow, the struggle is so real. I am just stunned by seeing how strong you are and how you have been dealing with this. Everyone should read this, everyone should understand this.
Thank you for sharing this.
I hope you feel better soon.
Take care.

I am better, the physical symptoms will take a couple of days to die down, but the family have called the cavalry, Autism Association. They will wrap me in cotton wool for a while & take over social security. It’s frustrating to have limits but things are so much better than they used to be. Thank you so much, your support means a lot to me.

Oh no! Your frustrations are understandable and not over the top. In fact, I don’t know how you had the courage to keep trying when dealing with all that. I would have crumbled, rolled in a ball, and probably been carted out. You kept going!

The cards that someone above suggested sound like a great idea. Even if you can’t get the real ones, you might make something similar–like ID bracelets. The bracelets and dog tags are common in the US for people with a severe allergy or epilepsy.

Thank you so much. I showed my support coordinator the website Tim sent, if I can get some official looking cards I will. Otherwise I might make some. I made my own bracelet that spelt Autistic but I had trouble wearing something on my wrist. Dog tags are going on my list to look for. Thanks for the support.

Hugs to you! You are so brave… I can totally understand the frustration. It happens to my son sometimes and he tries to keep quiet and usually does but he can’t keep still. If others can’t cope it’s their problem. You and your family do enough. Greetings from Spain.

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